How can I help?

[slmm97]

First post. I can't tell you how happy I was to find this forum.

My boyfriend's mother was diagnosed with ALS about a year ago. He and I have been dating for more than two years. We're in our 20s.

In spring, his mother is going to be moving in with him, and he'll become her primary caregiver. I realize this move will change our relationship completely, although I doubt I've fully grasped the complexities of it. We're going to go through hell in the next few years, I know. I've also considered the possibility he'll want to break off the relationship because all his emotional efforts will be spent taking care of his mom.

For as long as we're together, though, I'm hoping I can get some advice on ways to keep my boyfriend from burning out. He's the kind of person who will feel guilty if he takes time away from his mother. I just want to be able to do what I can to give him some breaks every now and then.

 

[CindyM]

Hello slmm97 and welcome to the fourm. I always say ALS affects the entire family and your post shows some of the reasons why. You and your boyfriend sound like a remarkable young couple to be willing to step up to this huge responsibility. You sound like a great couple!

This forum is a great place to learn what to expect and to get tips for how to cope. Almost no topic is off limits, and in fact if you use the search feature you will find that most everything has been discussed. If you can't find the answers, feel free to PM folks. We have a lot of expertise here. We have members who have been PALS (Persons living with ALS) for years. I am glad you found us! Cindy

 

[slmm97]

Thanks for the welcome, Cindy. I feel a bit like I'm intruding somehow. After all, I'm twice removed from the situation. Anytime I want to vent, a voice in my head says, "What right do YOU have to complain? Think of what the family is going through!"

 

[Al]

You are part of the extended family. It affects you also. I wouldn't say you are intruding. I'd say you are caring. Which is good.
AL.